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Mother Shares Heartbreaking Testimony about Sons with Severe ME

This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated their lives.

The Chronic Fatigue Syndrome Advisory Committee – CFSAC – met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.

Good afternoon,

By my calculations, I have participated in more than 20 CFSAC meetings since 2007.

Back then I could never have imagined that as a mother of two sons, severely ill and housebound with ME, I would see so little progress in these 11 years from HHS agencies.

In October 2010 my son Matthew told this committee:

“The horrible thing is, I’m not sure how devastating this illness really is. I’ve been sick for so long… that I don’t know what normality feels like.

I used to swim 4 times a week, 5 miles each time. Now I can get my heart rate over 160 beats per minute by running in place for 30 seconds.

I used to be a straight A student. Now I can barely concentrate for 20 minutes in a day (no more than 3 times a week). After that, it gets exponentially more difficult and exhausting.

I used to have a typical, active life. Now my daily life is impossible to plan in advance, because there are days when getting out of bed seems beyond absurd.”

In October 2010, my son Alexander told this committee:

I taught myself to read at the age of 4. At the age of six, I was reading computer-troubleshooting magazines. (And understanding them.)

Now, I read and reread things to try to ensure that I understand them.

I used to be able to remember where I had last seen a book, a game, a drink…

Now, if I set my water bottle down close to the sink to wash my hands, I often walk away, having totally forgotten that I wanted to take a drink back upstairs with me.

I used to empty and fill the dishwasher, change the sheets on my bed, put away my clothes, as some of my responsibilities.

Now, each of these activities triggers tachycardia (POTS episodes). …[The] pounding, rapid heartbeat exhausts me and leaves my brain even more fogged.

I used to attend school full-time, participate in theatre and swim competitively.

Now, I am housebound.

I want to be more active.

I want to be able to hang out with people.

I want to be able to go to school.

I want to be MYSELF again.”

And here we are.

Again. 2018.

Another CFSAC meeting.

And I am still nervous at each one because patients lives are at stake. Still.

More than thirteen years have gone by since Matthew came down with ME at the age of 12. He is now 25.

More than twelve years have gone by since Alexander came down with ME at the age of 14. He is now 27.

All these years after they got ME, my sons are still just as severely disabled by ME.

They require 24/7 care, are unable to reach their intellectual potential, unable to live independently and are just as severely disabled by ME as when they got sick because there hasn’t been enough biomedical research to develop diagnostic tests, run trials and develop treatments for patients.

It is because of the persistent and appallingly low level of funding for ME research that there are no appropriate diagnostic tests, trials and treatments which would enable my sons and all patients to have a better quality of life, improved functionality and a return to productivity.

In a letter to a patient, NIH talked about its commitment to accelerating biomedical research and funding for ME to find treatments and a cure.

It also talked about things like program announcements, and grant-writing workshops to help those submitting grants.

Sounds great huh?

Like they’re doing things for us, right?

Here’s the catch. The letter was written in 2010. The same year as my sons’ comments to this committee. Parts of the letter read very much like NIH’s language in their FY 2019 appropriations submission.

Nowhere in the letter from 2010 or the FY2019 language is there evidence that NIH is urgently addressing the needs of those affected by ME.

Nowhere is there evidence that NIH is aggressively maximizing all of the tools at their disposal.

Nowhere is there evidence that NIH is being innovative in their response to the decades old need to accelerate biomedical research and increase funding in order to solve ME!!!

NIH has repeatedly failed and continues to fail to aggressively maximize all of the tools at their disposal.

In May 2018, Dr. Collins (head of NIH) received a letter signed by over 7000 people detailing a plan of action that could easily accelerate the pace of ME research. If you haven’t read it, I urge you to do so.

As Ben mentioned earlier, the letter was developed as a framework of actions that NIH (and HHS agencies) can take now, concurrently to move things forward in a scientifically sound manner.

The letter included suggestions for multiple simultaneous efforts such as:

  • Issuing RFAs
  • Ensuring development of the much needed consensus derived research case definition
  • Funding program announcements
  • Accelerating the pace of the intramural study
  • Issuing administrative supplements to provide additional support for the current collaborative research centers and the data management coordinating center
  • Funding additional collaborative research centers
  • Establishing a cross-agency strategic research plan

Thus far NIH has not responded to the letter.

And yet ALL of the things detailed in the letter are eminently doable using mechanisms currently available to NIH (and HHS agencies).

So the question is – what does it take for NIH to promptly and fully engage with us in the proposed plan of action to expeditiously move things forward for us?

We need

aggressive,

sustained,

simultaneous efforts to improve outcomes as soon as possible! We need them NOW!

– Denise Lopez-Majano

#MEAction serves as a non-voting liaison on CFSAC. If you are interested in getting involved with #MEAction’s work at CFSAC, please fill out the volunteer form, or email cfsac@meaction.net.

 

Categories: Advocacy, All News, Awareness, Featured news, HHS, ME in Children, Medicine, Uncategorized, United States

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15 comments on “Mother Shares Heartbreaking Testimony about Sons with Severe ME
  1. S says:

    Same issue for me and my family, my mum, me, and my two brothers fell ill with M.E. in 1988. We’re still all significantly disabled and housebound today. Between us we have spent 120 years ill. My mum is now a pensioner and my brothers and i are now middle-aged having never experianced what it was like to be a teenager or young person. We all waited for research to help us have a better quality life, never realising that there was a deliberate policy not to do any.

    1. Denise L-M says:

      Hi S, I am so enraged that your family has been sick for so long.
      It is infuriating to me that the inaction of government(s) has kept so many people from being productive, from being fully engaged with life….

      I send you good thoughts and hope that we (those who can advocate) can make things change!

      Denise

      1. S says:

        I send my best wishes to you and your sons too. After all these years my family and i are still very hopeful😊 and it’s great to see everything that’s been happening recently.

    2. Lisa Harms says:

      Dear S, I am so saddened to hear your tragic story. I too got sick in 1986 at the age of 29 and suddenly here I am at 61, housebound and sicker than ever. I have lost over half my life. And virtually nothing has changed over the three decades. But to get sick with this truly awful disease that robs one of precious life as a child or teenager is beyond tragic. And I can’t imagine what it’s like to have your family sick as well. I agree with you that there is a very deliberate policy to not take this illness seriously. Someday, I hope, in my lifetime, to hear why. Thank you for posting your comment.
      Lisa

      1. As a mother of a son with severe ME/CFS (totally bedridden and doesn’t talk) I can’t help but wonder if there is some sort of cover up!!
        Reading other people’s stories and how they have been treated along with my son I am starting to think that Governments world wide don’t want to get involved They offer very little funding, if any, doctors in general don’t want to hear about people with ME/CFS – does make you wonder!!
        So many people start their journey with ME/CFS with an infection of some kind you would think that Gov Medical Authorities would have by now looked into this. Instead it’s often the sick and family members of sick people who are asking all the questions , trying to research the illness and often get kicked in the guts for all their trouble Everly little support , both financially and emotionally is given to ME/CFS patients and this is happening all over the world!!

  2. Catherine says:

    Heartbreaking to hear both her sons have ME. I hear these stories, over and over it’s the same thing, the blatant disregard the willfulness to do NOTHING! Makes me think there is something else going on behind the scenes that we are not privy to know.

    1. Lisa Harms says:

      I so agree with you that the intentional neglect of this devastating disease makes one think there is something going on behind the scenes.

  3. Stacey Webster says:

    Can anyone tell me the name of this Mom?

    1. Denise L-M says:

      Hi Stacey, I am the mom who gave this public comment.

      Denise Lopez-Majano

  4. Lisa Harms says:

    Thank you Denise Lopez-Majano and your sons for your testimony. I can’t imagine what it’s like to see your children suffer with this awful disease. And both your sons! It is truly heartbreaking to hear of young lives lost, of your boys being unable to reach their potential, of being unable to be ‘real’ teenagers and experience and explore life. This illness is hard enough to have as an adult.

    And how is it that both your sons got sick? If nothing else, aren’t these agencies even concerned about how this devastating disease spreads? I’ve been sick for 32 years and while we do know some more about ME/CFS, it’s a paucity of information compared to what we should know after three decades. I have seen so little change. I got sick when I was 29 years old. At 61, I no longer hold out any hope for ever improving in my lifetime. This is not depression talking but simply a realistic attitude based upon 32 years of progressive decline and no hope, not even near hope for any treatment on the horizon. Francis Collins talks about how serious ME/CFS is but that’s all it is-talk. Actions speak louder than talk.

    I keep wondering why our government is so bent on ignoring us and trying to make this illness go away or pretend it doesn’t exist. Catherine, I agree with you. This intentional neglect makes me think too that there is something else going on behind the scenes that we are not privy to.

  5. jimells says:

    “So the question is – what does it take for NIH to promptly and fully engage with us in the proposed plan of action to expeditiously move things forward for us?”

    They need permission from the disability insurers or a court order. Most disability insurance still has a two year limitation on so-called “mental illness”. The continuing ambiguity regarding the illness means they can get away with cutting off benefits after two years. There are billions of dollars at stake. In a dollar democracy, those insurance company dollars have a lot more pull than a bunch of sick people who are regarded as useless eaters.

    For decades, Unum , Swiss Re, and others have been paying the “Wessely School” psychobabblers to promote ME as mental illness that can be “cured” with psychotherapy and exercise. Now that the HMS PACE Trial is headed for a watery grave, Regius Professor Sir Simon is trying to quietly swim away with his pension and awards by denying his connections to PACE. Professor Michael Sharpe seems to have a terminal case of foot-in-mouth disease which will come back to haunt him. Professor Peter White has quietly retired and presumably hopes that we all forget his role in our suffering. Even Professor Esther Crawley has finally figured out to put a sock in it.

    If these people are allowed to quietly fade into the background it will take another generation for physicians, institutions, and insurers to stop abusing us. We mustn’t let that happen!

    Begging NIH and CDC to do their job will continue to accomplish little beyond window-dressing. We need to go after the *real* decision makers in the insurance industry. The Wessely School continues to be the weak link. Their numerous and obvious conflicts of interest are well documented and not in doubt. They are hired guns for insurers on both sides of the Atlantic. This is the thread we need to pull on.

    A proper investigation and civil complaint will bring them down, just like we have seen for the tobacco industry. Yes it will be expensive and difficult. The first attempts may fail. But Alem Matthees’ successful Freedom of Information suit in the UK shows that it can be done. He sacrificed himself in the pursuit of PACE Trial data. Let not his sacrifice be in vain.

  6. Helen Donovan says:

    My name is Helen Donovan, I am the mother of ALEM Matthees. At the moment am sitting in his bedroom reading these tweets
    I’ve never tweeted before but I just want to say a HUGH THANK YOU to the ME/CFS for not forgetting my son
    As you would all be aware he is so very ill now and completely bedridden. At the moment all my requests for help through agencies in Western Australia
    have been denied. I do live in hope and my only way of obtains any help is through the Old Age Care System – for a 38 year old man!!! Words fail me
    There is much going on in Australia at the moment about the PACE Trial and that is because we were lucky enough to have David Tuller visit us
    He came to see ALEM a couple of times and I am for ever thankful
    Thanks again to you all
    Helen ♥️♥️♥️

    1. Margaret Smith says:

      Hi Helen

      It is us that should be saying a huge thank you to you and your Alem.

      The global ME community has definitely had quite a few heroes over the past few decades. And some of them have even managed to be instrumental in helping to change things for the better.

      Your son Alem most definitely falls into that latter category. The global ME community owes him a huge debt of gratitude. We just hope that he will recover very soon from the devastating impact of the flip side of his amazing efforts.

      I, we, wish him well.
      A very grateful ME patient.
      Margaret. xx

      1. Margaret

        Thank you so much for lovely reply It’s belonging to groups like this and talking to people like yourself that keep me going and I always tell ALEM , he is not forgotten!!

        Thank you again Helen I wish you all the best too and hope things improve

        1. Penelope Scales says:

          I just wanted to add that today’s young people with ME are so much more capable of reaching the health/political systems that are in place. Way over 30 yrs. ago we were ignored totally. As a matter of fact, if you even mentioned you had what was then known as CFS, you were laughed at & made to feel ashamed. I was terrified my entire family would fall victim to it. Actually, I thought I had AIDS…it was the only thing that even made any sense.

          I’d had surgeries placing a shunt in my spinal cord followed by brain surgery 5 yrs. later. It was the cord surgery (agonizing) that began my journey with ME. At least I was fortunate enough to have both a myosfascial therapist & my neurologist confirm within a fairly short period of time what I had.

          Back then, in order to help others everything was done by telephone or writing letters. No Internet, of course. I finally ended up getting calls from people around the world with this….and none had been given a reason for it. Govts. knew about this for at least this long (30+ yrs.)…what is it?….what causes it?…..and no, we’re not mentally ill. Garlands for you & your son and all the bright & capable younger people today. GO FOR IT!!

          Eleanor

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